CSN Login
Members Online: 2

You are here

Genetics

Txgrl
Posts: 31
Joined: Apr 2014

I was wondering if any of your kids have had  kidney cancer. I have been told by some drs its not hereditary and some say it can be.

APny's picture
APny
Posts: 1998
Joined: Mar 2014

Well, there are absolutely no incidents of cancer in my family, kidney or other kinds, except for a remote great aunt from a long way back. Other than her, no one ever had cancer yet here I am. So I don't know if there are genetic factors for some people but clearly there aren't for others.

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

It is due to both.  Generally heriditary cancers will show up in youngsters and/or those with bi-lateral tumors.  But for the majority of RCC patients (especially those over age 50 or so) it is not heriditary.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I heard an expert speak about this at one of the KCA sponsored events a few months ago. She said that 90% of kidney cancer is not hereditary, and something like 10% has some hereditary components (and some small part is completely hereditary). They know quite a bit about this. She'd said if you don't have any kidney cancer that you know of in your family, then probably yours is not inherited. However, they can do genetic testing if you're not sure and want to know if your children are at risk.

I've considered doing this, because I'm adopted on my father's side, and because my mother's father died young and we don't have history on that branch of the family, so a good 3/4 of my family history isn't available. I'm still thinking about it. The testing isn't particularly expensive. I'm not sure if it's covered by insurance or not.

Todd

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Everyone thinks about inherited disease and a genetic propensity. But most of us know that that isn't the case. however, sometimes several in a family can all have similar cancers. But then you have to look at the enviornmental factors. Tainted water and such.

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

The thing about genetics and kidney cancer, is they don't know all the causitive genes. My cancer is most certainly genetic (according to Dr. Linehan at NIH), as my father and grandfather had it.  But, the causitive genes have not been identified:  I do not have VHL or any of the other known syndrom.  I am BRCA1 positive.  So, they my genes and my fathers genes, and compare my genome to other cancer patients, and see if there are patterns....

In Iceland, where they have much better family records and a more agressive national health care system (with no HIPAA).  Using the database, they found that 60% of icelander with RCC had a first or second degree relative with RCC. http://onlinelibrary.wiley.com/doi/10.1002/ijc.10513/full.  So, that strongly suggest some type of geneetic link.

The way it was explained to me at NIH is it may be a combination of genetics that allow us to be predisposed for the cancer; if it is multiple genes then it becomes harder to identify the causitive gene.

nsb748's picture
nsb748
Posts: 90
Joined: Feb 2014

I was told by my oncologist that there is an increased risk, however it is only something like a 25% greater chance of getting it.

This sounds like a scary number until you take into account the small percentages of the population you are dealing with.  If you normally would have a 1% chance, having a parent with RCC would cause you to have a 1.25% chance.  (these are not real numbers by the way, I just made them up to use as an example)

So there basically is an increase in risk, but ultimately the difference is negligible

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

If you are the only one in your family that has had kidney cancer, then that may be true, particularly if you have other risk factors (smoking, chem exposure, motorcycles).  However, if more than one person in the family has RCC, then the odds change dramatically.  In my case, my father and grand father had it.  I talked to my Dr about it, and my concerns were dismissed.  About 5 years later, I got a CT for other purposes, and they found the tumor.

Genetically, I probably had a >10%  chance at that time (my guess).  Now, with my cancer, my daughter and sister have a significant chance, but with the genetic component unknown, we can't really assess the probablity.  If it is one gene, it is 50%, two genes, 25%, etc.

The lack of understanding of the role of genetics is frightening to me.  It would be interesting to match the genome of all RCC patients, and see what patterns emerge.  However that would probably cost more than $100,000,000, so it is not happening.

I would love for my daughter to have a test for the risk.  Instead, she will be scanned probably starting at 30....

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Ah dhs, so motorcycles increase the risk of getting Cancer..? Really.?

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

I can never be completely serious.  It seems to me there are a disproportionate number of motorcycle riders with cancer.  There are two explinations: 1) motorcycles cause cancer, or 2) people with cancer that wanted a cycle say wtf, and buy one. 

Just trying to put a little humor in a serious topic.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

A related issue, there have been several different types of kidney cancer identified and each is quite different from the others. That alone adds quite some complexity to the issue of genetics and kidney cancer. I believe the expert I heard speak was talking about clear cell RCC. Some other, more rare types have much higher genetic components from what she was saying.

I got the idea from her talk, that they could do tests to see if it was likely an inherited genetic abnormality versus a genetic abnormality that was induced after birth (from the environment, for example), but like you said dhs, it is probably only for the genes they've identified so far, and that list is not exhaustive. She said that testing might give some insight as to whether children should be monitored more closely, but for clear cell RCC she did say that most  of it was not caused by inherited genetic abnormalities and most people with ccRCC don't need to be tested for that. How she could say that definitely? I don't know.

Todd

nsb748's picture
nsb748
Posts: 90
Joined: Feb 2014

It would defintiely be interesting to see a full blown study of this.  In my previous post, I was referring specifically to a conversation about clear cell RCC that I had with my oncologist.  I agree with Fox, you wonder how much of the increased risk is due to environmental factors rather than genetics.  I.E.  second hand smoke, tainted water, diet, climate, etc. 

I'm a sucker for statistical analysis

 

Regardless of whether or not there is an increased risk, I know I will push my son to at least get an ultrasound every once in a while when he gets older. 

Better safe than sorry. 

 

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

The doctor I heard speak on this at the LA Kidney Cancer Association meeting was:

http://www.cedars-sinai.edu/Bios---Physician/A-G/Ora-Karp-Gordon-MD.aspx

Who is the director at:

http://www.cedars-sinai.edu/Patients/Programs-and-Services/Medical-Genetics-Institute/

In case anyone is interested. They have a screening program there at  Cedars Sinai that I've been considering getting tested (because I don't know most of my family history).

Todd

 

 

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

when I was in physical therapy school. We had a textbook that stated that the rehab potential of motorcyclists was poor because of the lifestyle they (we) lived. Can you believe that crap? Now maybe needing a new liver due to cirrhosis is expected....degenerate losers.

nsb748's picture
nsb748
Posts: 90
Joined: Feb 2014

Motorcycles could be an environmental factor due to increased inhalation of fumes while on the road (from the bike, and from the surrounding cars).  Motorcyclists are also generally more mechanically inclined than the average population, so this would mean increased chance of contacting solvents, petroleum based products, and any number of other things that could be considered carcinogens. 

I'm guessing that your textbook was not referring to any of these things though. 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Yes there are a number of "us" bikers here... but if you read deeper it seems that some of us (not me) were found to have tumors when crashing then being scanned in the E.R.   Now this all sounds odd, but the guys that had those scans typically had their Cancer found very early, as there were no symptoms yet.  Kind of a paradox to say that a bike crash saved their lives.. but it has happened.   In my case I had a crash in 2000 but they never found the small growth at that time...  I would be in a much better position had they found it back then... IF it was there... dunno...

 

On the fumes, that could increase the risk, but that would take a study.. not sure how that would ever happen.   But chemicals, gas on the hands, etc definitely increase Cancer risk to some degree... same with other environment issues..  Heck everything we eat or do increases Cancer risk.. or so it seems...

 

So, here we all are... in one large group... but I think most of the bikers still ride to some degree... me, much less than I used to.. booo...

 

Ron

Txgrl
Posts: 31
Joined: Apr 2014

I have been having ultrasounds every 2 years. The last one I had said I had a renal simple cyst. Dr told me it was harmless. A lot of people have them. I am curious if it has anything to do with RCC since my dad has it. Dr tells me no connection. Hard for me to trust drs when they stopped checking my dad after 5 years. He would be in better shape if he would have been scanned regular.

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

I only settled for the ultrasound this year with my new urologist because i had an abdominal ct scan for something else just 3 months earlier and everything was ok at that time.  So I told doc next year would be ct scan time.  I do not personally trust ultrasound.

Txgrl
Posts: 31
Joined: Apr 2014

Have you had a bad experience with Ultrasound? My dr is against CT scans. She tells me they can give you cancer. She told me not to worry about my simple renal cyst. She told me since i was so paranoid she would refer me to a urologist so they can tell me its nothing to worry about. I am concerned since my dad had RCC. Better safe than sorry.

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

US has less resolution than CT scans, so small masses can easily be missed.  There is a tradeoff, though.  The radiation from a CT scan is a possible hazard.  For those of us with diagnosed cancer, the hazard of the extra radiation is much less than the likelyhook of missed tumors from ultrasound.  Plus ultrasound usually focuses on a specific organ.

For me, I get a CT of the chest and an MRI of the abdomen and pelvis -- because my kidneys can not handle the CT contrast.

The genetic specialists at NIH Urological Cancer group suggest that a Ultrasound is not sufficent for screening.

 

 

 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Txgrl... darn near everything can give us Cancer..  But the type of imaging depends on what the need is, and of course the other factors of the individual patient.  Ultra Sound is cheap, easy and quick..  But it does not give much detail or definition, compared to other types of imaging and in some cases will miss things.  Plus you have different types of imaging depending on what you are looking for.  So for us Cancer patients, finding a bump or enlarged Lymph Node does not tell much of a story.. while CT Scan for soft tissue and a Nuclear Bone scan for bone lesions, (CT with contrast if possible) will define likely Cancer Mets.  The risk of the radiation is low..  I get 4 CT Scans a year.. some people get them more often.  Other factors are age.. better to limit radiation to a child than an elderly person..  A good doctor evaluates the Risk Vs Reward...  So, it is rarey a factor of bad experience but more of what is needed.   Better to find Mets when they are small then when they are large and more difficult to treat.

Ron

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

had a bad experience with ultrsounds just last month it took 3 ultrasounds to pick up tumor in breast tissue.  As the radiologist tech told me, ultrasounds do not pick up everything. They are better for some diagnosis than others

 

Subscribe to Comments for "Genetics"